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#60: The Rarest of All Days

March 9, 2016

This week, uniting the clans. Getting together to make stuff happen for rare-disease families. Mainers are a private, reticent people. Is anybody out there?

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Tags Rare Disease Day, newborn screening, NORD
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#40: Don't Push This Button

October 21, 2015

This week, we're getting back into it with language. T has increasingly complex thoughts and wishes, and we gotta unlock those for her. Hitting it hard with signing, talking, and maybe even some AAC devices.        

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Tags AAC, augmentative and alternative communication, Boston Children's Hospital, SLP, speech and language therapy, rare disease, Maine Rare, NORD, Rare Disease Day
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Start at the beginning.

I've been writing about Tess since February 2014.

If you want to read more about my life with Tess, head over to my personal blog, bobigelow.com, and start with the first post.


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